Bringing Home the Family Engagement Priorities: Part 3
Authors: Edgenie Bellah, Family Engagement Coordinator, Texas Deafblind Project, Outreach Program, Texas School for the Blind and Visually Impaired (TSBVI)
Introduction
In the August 2023 Special Issue of TX SenseAbilities, we presented foundational insights into the Value of Family Engagement: Identifying Unique Needs and Priorities of Families with Children Who Are Deaf-Blind (Family Engagement Report). If you haven’t examined this special issue yet, it’s a must-read—filled with the real experiences and needs of families that are sparking a nationwide movement. We’re not just sharing their stories; we’re inviting you to be part of the change. Take a moment to reflect on the definition of family engagement—it’s not just words; it’s a guiding light for us as we lead the charge in making big, impactful changes to how we partner with families in creating possibilities for children and young adults who are blind, deafblind or have low vision. It’s a call to action, and we want you with us every step of the way!
This issue focuses on the final two Direct Services Priorities outlined in the Family Engagement Report. We are pleased to share articles written by individuals and families:
- Supporting Siblings, written by a sister who is also her brother’s guardian, is an important read to gain insight into brothers and sisters.
- Lions, Tigers and Medicaid Waivers: OH MY!, written by one of our Family Lynx Leaders, describes her family’s waiver journey and offers advice to other families and caregivers about ways to navigate the Medicaid Waiver system in Texas.
- In honor of Deaf/Hard of Hearing Awareness Month, which is celebrated each September, Heather Withrow (Parent, ASDC Board Member, and DeafBlind Transition Consultant, Texas Deafblind Project, Outreach Program, Texas School for the Blind and Visually Impaired), in her article introduces us to the American Society of Deaf Children.
All three of these articles are included in the Family Wisdom Section of this issue of TX SenseAbilities, and their stories accentuate the importance of these priorities of the Family Engagement Report. They serve as the powerful driving force for family engagement in the state of Texas.
Excerpts from the Family Engagement Report:
A Bit About the Priorities
The Family Engagement Priorities emerged from a five-month visioning process facilitated by the National Center on Deaf-Blindness to illuminate state-level priorities and national-level supports for families of children who are deaf-blind. This work generated two types of priorities:
- The Direct Service Priorities are intended to drive the work of technical assistance providers as they partner with families in navigating supports and systems.
- The State and National Priorities for Systems Change outline the next steps intended to expand synergies in services for families with individuals who are deaf-blind.
Direct Services Priority 7: Enable equity of family engagement through universally accessible, culturally affirmative, and unbiased services and supports.
Empower diverse family leadership in all we do through the use of accessible language and by honoring lived experiences. Equality does not equal equity and involves educating everyone–professionals and families–to understand the difference.
What this looks like in practice…
- Having cultural awareness of disability and its impact on the family
- Partnering with and supporting community organizations to meet family needs and assist with identification and referral
- When planning, considering how access and privilege play a part in equitable service delivery; assuming interest and competence
- Developing parent leaders who have children who are deaf-blind from an array of cultures
- Collaborating with organizations that work with immigrant and refugee families
- Ensuring your state deaf-blind project website is accessible, and information is available in the primary languages spoken by your families
- Providing additional resources for families in rural areas
- Capitalizing on grants for rural communities
- Creating positive relationships with teachers and early interventionists
- Training and building positive relationships with doctors
Direct Services Priority 8: Amplify diverse family voices, inclusion, and leadership at all levels (e.g., classroom; local, state, and national; services, agencies, policy, and legislation; technical assistance systems; and national organizations). “Nothing about us without us.”
Through deliberate mentorship, state deaf-blind projects and other professionals can support families as they take the initiative to assume leadership roles at the local, state, and national levels. Family members need an active seat at the table to improve network partnerships and services. This starts by providing training and support to them to serve in advisory roles and making sure that the representation of families is diverse. Consistently revisiting training plans to include families is essential to equitable services.
What this looks like in practice…
- Supporting families with different cultural backgrounds as they take positions of leadership
- Supporting families by leveraging their interests, skills, backgrounds, experience, and comfort levels to help them find their niche in advocacy and connect them to family advocacy groups
- Inviting families to participate in Deaf-Blind TA Network Peer Learning Communities
- Connecting the family with their local, state, and national transition services
- Partnering with families to provide training sessions to raise awareness about deaf-blindness and family perspective
- Encouraging families to participate in research studies
- Inviting family participation in state deaf-blind project family engagement goals and activities
- Mentoring families to participate in national-level work
- Seeking partnerships with local service clubs to increase awareness
- Participating in national and international organizations to expand connections